I really have no idea what I could have possibly of eaten…the only thing out of the ordinary was some decaf coffee I got from a 7-11 yesterday.  I used regular sugar and some coffee creamer (one that I know if gluten free) so I am at a loss of what else could of caused these annoying (and painful) blisters.

When I was younger and this would happen I would freak out and believe that I had cold sores or something horrible.  Thankfully today I understand that these painful, itchy blisters are caused by a gluten allergic reaction called Dermatitis Herpetiformis.  Dermatitis Herpetiformis or Duhring Disease is”…characterized by grouped excoriations; erythematous, urticarial plaques; and papules with vesicles.”  according to emedicine.medscape.com.  Most places that are affected are on the buttocks, elbows, knees, shoulders and back.  However mine always appear on my lips (rare, but I have heard of other Celiac sufferers having it appear here as well.)  Also according to “Understanding Dermatitis Herpetiformis or Duhring’s Disease” a treatment called “Dapsone” (an antibiotic) has been known to help people suffering from Dermatitis Herpetiformis.

Personally I have never tried Dapsone, usually mine will clear up on its own in about a week or so.  I have also tried holding a wet caffeinated tea bag between my lips (when they got really bad).  Tea contains Tannin, which has anti-inflammatory effect.  It worked pretty well for me…otherwise I’m pretty much just stuck with blistering lips that itch and burn for a week.  Keeping them moisturized with petroleum jelly seems to help too so I don’t feel they scrap together.

So here goes another week of swollen and blistering lips…fun fun.

I recently came across a website that claims to have a “Celiac Disease Home Test“.  What they call a “Biocard Celiac Home Test” where you get a single-one time use test kit.

They are based in Canada and I do not believe they sell directly yet to the US…however they have a phone number you can call to speak with them if you live in the US (so I’m not sure where that leads…if your able to purchase or not).  They have an instructional video you can watch that shows someone taking a Celiac home test.  Seems like a lot of careful work to me, however it is only $50 compared to what a test would cost from a doctor.  Also they go on to say that if you do in fact test positive you should seek out a doctor to see what to do next.  Kinda defeats the no doctor approach…but I could see how this would help those who don’t have health insurance or just don’t have the money at the moment.

Of course you could always start eating gluten free to see if you feel better.  However beware – once you start eating gluten free a test for Celiac Disease will come out negative.  The reasons for this are best explained by uchospitals.edu in their article about Blood Test for Celiac Disease.  Also they further explain why you should go beyond just the blood test and do a endoscopic biopsy (I did this along with the blood test).

So to take the test or not to take the test?

Personally I cannot try it out since I have been gluten free for seven years…but I’d be interested in hearing if anyone else has tried this at home test!  I don’t see why it couldn’t hurt to try if you suspect you show symptoms of  Celiac Disease.

So What’s in them?

The first bottle is called “Total Body Purifier“  to clean and stimulate your digestive system with special herbs.  The second bottle is called “Colon Clear Formula” which cleans your colon and remove toxins.  So I read the ingredients and besides a bunch of herbs there wasn’t any clear indicators for wheat…plus at the bottom in bold said Contains: Soy (normally where wheat or gluten would be listed).

What I did.

Monday morning I took one of each pill with a full glass of water and a meal (Chocolate Chex).  I didn’t really notice any difference after the first 30 minutes, but then all of a sudden my stomach cramped and I couldn’t even sit myself up I was in so much pain.  Then I felt like a could throw it back up like something was burning in my throat and my mouth was filling with saliva (like when your about to throw up-gross I know).  After laying down for 4 hours in terrible pain it worked but I still had pain for another hour.  I ended up eating some eggs and drinking water- which helped and my stomach felt somewhat better.

I again took them with dinner because I read online that some people feel sick for the first few days when they start to take them and that the body has to adjust to it.  Again 30 minutes later I started to feel awful, only this time it was 10 times worse, it hurt to breathe, I could not sit up my stomach was cramping, felt like I had a fever and I felt so dizzy like I could pass out.  I described to my husband that it felt like I had just eaten a loaf of bread that had wheat in it.  I spent hours in the bathroom and laying down in bed feeling so horrible.  About 7 hours later I ate some crackers and water which seemed to help but my stomach was extremely bloated and it felt like someone has punched me in the stomach over and over again.  Least to say I did not take them the next morning.

Barley Grass?

This brings me to the Barley Grass part of my post.  I looked at the bottles and read them thoroughly (I will admit I did somewhat “skim read” ingredients in the store) and I found it listed Barley Grass Powder as an ingredient.  And I though “huh, Barley isn’t gluten free…so what is Barley Grass Powder and why isn’t it listed as gluten??”.  I Googled “barley grass power (leaf) does it contain gluten”.  And most everything pointed to Barley Grass being Gluten Free.  Finally I looked up “does barley grass contain gluten” which gave me some conflicting answers.

On natural-nutrition-for-health.com they have an article about how Barley Grass in in fact Gluten Free because Barley Grass power is harvested before the grain stalk has started to develop- therefore making it gluten free.  However Celiac.com has a forum where someone asked the same question and people seemed to say that it is not gluten free because there was such a risk for contamination.  Also on neurotalk.psychcentral.com and on their forum someone with the user name aklap (the last answer) gave alot of great links of how Barley Grass is in fact not gluten free.

Conclusion.

Overall I have concluded that Barley Grass is not gluten free, even though colon cleanse companies claim otherwise.  Also on a side note- the same goes for wheat grass in what research I found.  Now of course there were those (very few) who said they were Celiac and they felt fine after eating barley grass.  But I would seriously beware of the stuff.  I found it to not be a pleasant experience and a lesson to not skim long labels

Now I get that if you do not truly have Celiac Disease and you are only going gluten free to loose weight that it may not work as well as one would have hoped considering you can still bake cookies…just with a gluten free recipe or that some gluten free products actually have more calories than regular gluten filled foods.  I personally gained about 15 pounds after going gluten free, granted I was severely malnourished from suffering from Celiac for 15 years before getting diagnosed.

So what really bothers me about these articles that seem to be complaining about seeing gluten free products on store shelves?  To me it just goes to show how oblivious some people in society today can be when they do not have to worry about every little thing they eat thinking- is this going to make me sick in the bathroom for a week?  Or damage my intestines, possibly causing cancer later on?  These people will probably never fully understand how wonderful it is for people living with Celiac Disease to go into a regular grocery store and pick up a baking mix or even some cereal…that tastes like real cereal!  And the sad thing is they probably will never understand, unless they or someone close to them develops a severe food allergy or autoimmune disorder.

And to the people who they claim do not need gluten free foods since they do not truly have Celiac Disease, I am happy that they are taking an interest in gluten free foods.  And I hope they continue to purchase gluten free products to encourage companies making the gluten free foods to continue doing so!